INFORMATION FOR PATIENTS

Cystinosis is a rare genetic disease that causes the abnormal build-up of the amino acid cystine in your cells and affects several organs in your body.

What is Cystinosis and how does it affect people?

• For an overview of Cystinosis, the cause of this disease, how it affects people and further information about the genetics of this disease – please click the following link;
  • Genetics Home Reference – Cystinosis

How do other people feel and what is their experience?

• Gabbie’s Story Living With Cystinosis
  • https://www.youtube.com/watch?v=TPoHp-ViSIQ

Patient Support Groups

• Cystinosis Support Group Australia
  • https://www.facebook.com/Cystinosis-Support-Group-Australia-196784193691484/International
•  Cystinosis Research Network
  • https://cystinosis.org

Further Information

• Cystinosis Research Foundation
  • https://www.cystinosisresearch.org
• Cystinosis Foundation
  • http://www.cystinosisfoundation.org

More detailed Information for Patients will be available on the ARRK website in the near future.

If you would like to be part of a Disease Specific Research Group (DSRG) for Cystinosis, please contact the ARRK registry (arrkregistry1@gmail.com).

The resources on this site should not be used as a replacement for care or advice from your medical doctor. If you have questions about a medical condition or health related issue, please consult your medical doctor or a healthcare professional.

This page was last updated on 15th Oct, 2018.